PSP Association
5,638 members7,700 posts

Birthday Celebration with Family

Charles' birthday was yesterday. Brother and sister in law traveled across the country to celebrate and say goodbye.

Afraid Charles will give up when they leave. He's almost catatonic and so tired from even the littlest effort. He is so skinny and will soon not be able to leave the bed. It's the next stage and who knows. Everyone says take it a day at a time, which I do but it is so difficult. I'm not certain I'll have the strength I need to go on, but I don't have any alternative.

Keep us in your thoughts. Any advice would be welcome.

Cuttercat

27 Replies
oldestnewest

L,

How wonderful that his brother made the effort to get there for Charles’ birthday! It must be so very painfully difficult to watch him moving down the slippery slope, knowing what is at the end. I worry about you, and pray for you often. Can you grab hold of this ((big hug)) I am sending to you?

Much love,

Ann

5 likes
Reply

Hello Cuttercat

I have no advice, you are very experienced.

Just how wonderful the family was there and so sad he is so depleted now.

I am close behind with my Liz... The sadness, of what little we can still share, creeps up on me when I think of her... Which is many times a day. I guess I'm saying I understand.

Warmly

Kevin

8 likes
Reply

Glimples are what the relatives say. I guess I don't see it. We live in a cacoon, so I just keep things going, They say he'll be here awhile. None of us knows.

Cuttercat

2 likes
Reply

No advice but feeling very sad for you and Charles, I can empathise with that feeling of “not sure I can go this anymore” I get thatxx

One day at a time is all we can do

Love and hugs xx

Helen xxx

6 likes
Reply

Dear CC isn't it tragic that it has to be like this, the waiting game is painful for all of us. It is filled with love, grief and anxiety what a wonderful mix of emotions, no wonder we feel on our last legs at times but many of us have that extra gear that we are able to go into to get us through. Not sure I have any great advice that you don't already know but you will get through this long and arduous journey supporting Charles, somehow.

Sending you much love and a big hug

Kate xxx

3 likes
Reply

You said it perfectly.

Cuttercat

1 like
Reply

So sorry, cuttercat. You will survive because we do. But I know how hard it is.

You have been so brave and strong and will continue. Big, big hug from Jean xxx

4 likes
Reply

Thinking of you and sending much love your way. ❤❤❤

1 like
Reply

Dear Cutter, I feel the least qualified of all the wonderful folk here to respond to you, but I sincerely send my support and sympathy.

The only positive I can see in this manner of life leaving us, is that we have so much warning and can draw every moment of love from the final weeks or months of hugs and caresses. I hope you have full and rich moments of love amidst the pain in the days to come.

Hugs & love to you ❤

Anne G.

4 likes
Reply

CC, you do have the strength, because we are all sending you a little bit. You can do this, in exactly the same way you have got to this stage, because you love Charles and will do anything and everything to make time left, the best you can. Remember the most important thing, you are his wife, accept all help, so you can fulfill this role.

Sending that extra bit of strength you need, with loads of love and huge hug.

Lots of love

Anne

5 likes
Reply

Dear Heady,

Everyone! says put him in a nursing home because I'm frazzled. They don't understand, the days keep me going and I am handling it right now. I keep a schedule that he feels comfortable.

Cuttercat

Reply

CC, you have to do what you think is best. I had given up and was in the middle of arranging for Steve to stay in a nursing home, but he died before I could get him in. For that I will always be grateful. But I didn't know how close the end was, just knew it wasn't safe for me to care for him on my own anymore. One thing is for certain, it would have been far worse, if something had happened to him, because of my exhaustion.

Sending big hug and much love

Lots of love

Anne

Reply

Sending as Heady suggested a little bit of extra strength. I wish I could say something deep and meaning but no sure what that would be so just lots of love and a big hug

Tippy xxxxx

2 likes
Reply

Sorry CC,No advice,don't let this darn disease take you both.its is just so sad and to know that you can't fix him,frustrating as hell,you are doing the best you know how to do it and I'm sure Charles know.

(((Hugs)))

Dee

2 likes
Reply

Yes, sad is my mantra. I have no idear when the end will come but I'll perservere.

Cuttercat

Reply

Big hugs xxx

1 like
Reply

My love to you as you stay the course. You are amazing.

2 likes
Reply

Sending lots of love and sympathy. Playing the waiting game myself as Jon has survived his 7th night without water. At least we have a short end point now. Your situation is harder but I know you will succeed. We all do because we care and because we have to.

My only advice is to accept any help offered. Friends are actually grateful to be able to do something for you. I even invited myself round to friends during carers visits and I'm sure they were pleased to be able to support me in that way. So accept and ask, to boost your reserves.

Rosemary Rx

3 likes
Reply

CC having walked the path you are travelling I completely understand how you are feeling and I am so sad for you both. I am sending you a big bear hug Jxx

1 like
Reply

Hang on, Cuttercat. You are strong and will make it through. As you can see, you are surrounded by loving kindness, even if it's long distance. Rest in what moments you can. Hug your Charles as much as you can.

Peace, Ec

4 likes
Reply

Special hugs to you dear one.

Cuttercat

Reply

Thank you.

Reply

That's so sad, oh it's just terrible for people dealing with this terrible ilness, it just brings family and carers lives into turmoil. Terrible time for you to watch this. Thinking of you. Hugs and xxx

2 likes
Reply

Sorry, no advice from me as you are teaching/showing me the way to have the strength. Every day is hard, but we seem to make it through them. Love, thoughts, and prayers coming your way from me.

Bobby

1 like
Reply

Bittersweet!

1 like
Reply

Dear Cuttercat

I am so sorry you and Charles are at this stage. I know how exhausted you are feeling. I was the same when Les reached this point.

You will find the strength you just have to dig deep. I was with Les for his last 4 days at the end of November. I didn't think I would be able to cope. I know how hard it is but Charles knows you are there for him and you, although exhausted, won't leave him. He needs you and you have always been there for him.

I wish I could send you the strength to cope but I am still trying to find some myself as, like you, I drained my resources.

My heart goes out to you at this horrible time.

Love and hugs to you both

Pat xx

2 likes
Reply

So many loving and wonderful posts by intelligent and knowledgeable friends. Such a tremendous blessing of love and support.

I too want to be there for my husband . The journey can be unbearable , but the emptiness that will remain is even worse. I wish I could give you a big hug, talk with you in your darkest hours, or offer you an amazing solution .

You have done great and if you are no longer able to care for Charles, that’s OK too. You will be a loving and caring partner and there for him wherever he is.

1 like
Reply

You may also like...